My DD only one in school w/ sick mother

[Tawanda]

My poor DD. She doesn't realize that she's the only one in her school with a sick mother. In this small community and school system, I would know by now (she's in 5th grade) if she had any peers in the same boat. I dragged myself to her open house, skipped the presentation because I didn't feel well, but got there so I could at least meet her teacher and see her classroom. My DD commented on how only her father was interested in anything. I am so sick of telling her I just didn't feel well. I saw all the other mothers, dressed to the 9s, just having gone to the open-house straight from their jobs.

I got a book out of the library about raising tweens, but then I realized it was upsetting me and had to put it down. Clearly it was a book written by healthy Moms for other healthy Moms who are ushering in the difficult teenage years and facing the typical teenage issues. I should be so lucky! I realized that I am not even on the same planet as the people. They are talking about how to deal with your kid's messy room, while I'm trying to figure out how many more years will I be around for her, and of those years, how many will be any good? The quality of my mothering has already been knocked horribly off course because of this friggin' disease. A messy room?? I wonder if there are any instruction manuals out there for us sick and alien Moms, or if we just have to struggle along on our own.

Mothers are supposed to be the caregivers, not the care receivers-not at this stage in the game when the kiddos are oh so young. Again, this is a very lonely disease, and this book just kind of iced the cake for me tonight.

[browneyedlana]

I am so sorry.I am not dx'd as of yet but they suspect MS.I have 5 kids..4 at home and a stepson that comes every other weekend.I find myself feeling angry and guilty and a hosts of other feelings when I have to struggle to do things with my kids and school activities.I want to be the one vounteering and leading girl scouts but I have to accept that I just cant right now.I know it does not change things or make it better but I do sympathize.God Bless!!

[isamadjul]

DD in 7th, 6th, 4th

and a son in 2nd so I hear you. I sense your boat might be flooding more then mine and for that I send you my love and lots of hugs ((())))). See I even sent them uneven like a MS walk... ! My 7th grader doesn't seem to want anyone to know that I'm sick and at first it didn't hurt but then the more I thought on it...it does! What can I do though? I haven't heard of anyone else nor have any of the teachers said anything about any other parents being "sick" with MS.

My 6th & 4th grader made shirts last yr orange with all there own added black words ALL ABOUT MS!!! Kinda made me feel good. But I still understand about the 7th grader cuz I don't want to go to school things when I'm walking funny or can't stand up straight. I don't want the moms looking at me!!

What kills me is that my kids...all 4 of them get that mom is different now...there old mom is gone and this is there new mom. But they still fight the same, they don't help out with a single chore, they fight with me just as much (my recent fav was when I had my eye patch on and a IV in for a 5day treatment for ON stood toe to toe with me in the kitchen and yelled at me (6thgrader)), the list can go on. For me this is what is the hardest above all. I have to pay someone with money we don't really have a lot of to help me clean and pick up the things I can't. GRRRRR

I tell ya what we as parents put up with!!! Then add the stress of MS... lol

isamadjul
(allyson)

[kif8skip]

couple of reads for you

As a Mom of young children it must be very difficult , especially on those bad days.....

I looked up a couple of articles that may be of use:

http://psychcentral.com/blog/archive...ronic-illness/

http://claireberman.com/mag_chronic.html

Take good care of YOU !

[SNOOPY]

Clearly it was a book written by healthy Moms for other healthy Moms who are ushering in the difficult teenage years and facing the typical teenage issues.

Tawanda,

Even with this disease your daughter will still deal with the normal teenage problems and difficulties. From my own experience I would guess when your daughter hits the difficult areas for her age your MS won't even be in her line of sight.

A messy room??

Well yeah, some of us moms (me) had an issue with messy rooms and it was a challenge sometimes to get both of my children to do what was expected. I didn't stop being a normal mom just because of this disease.

I wonder if there are any instruction manuals out there for us sick and alien Moms, or if we just have to struggle along on our own.

I just wanted any kind of instruction manual, unfortunately being a parent is on the job training

I don't know, maybe I am just different when it comes to dealing with this disease and parenting.

I went to every parent/teacher conference, school plays, choir concerts, soccer practice/games, and band concerts. I would volunteer in classrooms, for class parties and school fairs. I was a taxi driver for my children and their friends.

I did not do field trips or field days.

I didn't care what others thought about my balance/walking and my children didn't either, they just wanted me to be there, it made them happy. That's all that mattered to me --- they were happy I was there.

My husband was a cub scout den leader for several years and I went to every cub scout function. Our daughter was in girl scouts for a couple of years and I was there with her the whole time.

I was one of the few parents that stayed to help out in girl scouts, many of the (healthy) parents just dropped their daughters off and picked them up when it was over.

My children are now 19 & 21.

Try as best as possible to put MS aside and enjoy all that you can with your daughter, they grow up way too soon.

[KarenR]

I grew up with a disabled mother. My mother had polio.

BUT

until someone would ask, "what's wrong with your mother?", I didn't even notice that something was "different".

Mom could cook dinner and give one of us a swat on the behind simultaneously.

She never missed a concert, play, party, sleepover, etc.

She couldn't play sports, but she was a great scorekeeper.

She needed help with certain things (like putting her hair in a ponytail, some household chores, etc) but I never gave it a second thought. That was just the way it was in my home.

She never, ever asked for any accommodations, ever. She never had a handicap hang tag or special controls for the car. She never used the word disabled. She never made anything impossible. In fact, everything was possible with ingenuity and patience.

She loved books, and passed that love onto me. She had the voice of an angel and instilled in me a love of all music. She was the very best cook ever. I wish I was that good!

I could go on and on.

My point is, you are your daughter's MOM, not her 'sick' mom. Love your daughter. Do what you can with a smile on your face and love in your heart. Those are the things she will remember.

My mom is gone now. She passed away almost 4 years ago. Not a day goes by that I don't think of her and miss her. And never do I ever think of her as my disabled mom. She's just Mom.

Be well,

[chalknpens]

Hi Tawanda,

I never knew another parent who had MS or other chronic illness while my kids were in school. And I often felt guilty because my parents were sick and needed a lot of attention during my youngest one's school years. And I worked full time as a teacher, helping everyone else's kids and praying that teachers in school were helping mine.

I know that guilty feeling, I know that what if feeling, I know that "why do they write books like this" for parents who already have their health going for them?

I'm working on a book, Tawanda, in which I will tell the truth about an MS diagnosis and parenting, and working, and helping elder parents, and not being able to do everything you know everyone wants you to do.

I don't think it's always helpful for MS groups to have speakers who are mountain climbers with MS, or even room mothers with MS, when so many of us try to meet our kids needs and earn our fair share of the family budget.

Best I can suggest is what i tried for my youngest, a note to homeroom teacher explaining the disability's effect on your child's daily variation in mood, homework completion, class activities, (poster boards and glitter!) and ask for some compassion, for your child, for you.

We are human. We have weaknesses. We try to do our best, but sometimes, the Mom piece is the one that fractures easiest. I'm still trying to find a connection with my youngest, who is now over 21, is self-sufficient, doesn't really need a "quality time" with Mom, but has chosen a career that helps others, so similar to my own.

Remember that song, about the dad who finally realized ...:he turned out just like me,... my boy was just like me.And the Cat's in the cradle and the silver spoon, ... little boy blue and the man in the moon .... when you coming home son i don't know when, but we'll get together then, dad. You know we'll have a good time then...

Love you, Tawanda. You're doing what you can. It has to be enough.

[dreammakers]

Daughter of a Parent with MS

Hello,
As the daughter of a father with MS, I always knew my dad was doing all he could for my brothers and me. I decided to do what I could for fellow Children of Parents with MS.
Like your daughter, I was affected by my father living with MS, and recently started a nonprofit organization in the Greater DC area for Children of Parents with MS. We offer free programs for all families living with MS in the DC area, as well as a free penpals program to Connect, Support, and Empower Children of Parents with Multiple Sclerosis.
For more information about dreamMakerS and how you can be a part of our programs, including penpals, please visit: msdreammakers . org
Thank you~
Best, Liza Levenson

[Tawanda]

Thank you all for your encouragement!

(((friends at MSW)))!!!! Your replies made me feel so much better, and a lot less lonely. I got some great advice and some excellent resources. How kind of you all. I will re-read these responses after the weekend crunch and do some further investigating. I know that sitting on the pitypot doesn't help me or my daugher, but "feelings" don't always listen to your brain.

BTW, I just got a new stressor, but more like the "normal" kind. My DD insists on running for student council in her class. There will be one winner and sadly, it's not going to be her. My impulse is to put a stop to what is really a popularity contest that I know she will lose. Instead, I'm just going to have to wait it out Friday's election to be overwith so I can pick up the pieces. She will probably cry. I had to sign a form agreeing to her "campaign", and I felt like I was signing her death warrant. She's so excited about it, too, and I feel sick to my stomach and wondering if I should have protected her. At this age, one failure and the kid is done with "it" (whatever "it" happens to be). They only live in the now.

So I hear ya Snoopy. Parenting is not for sissies, even when you take M.S. out of the equation. Uggggh.

Again, thank you all for your understanding of my whining.

[cosake]

@ isamadjul - I can see both sides of the issue with the 7th grader. I was diagnosed when my oldest son was 13 and 1/2 and my youngest was just 11 (they are now 15 and 1/2 and 13).

I told them they could choose to tell their friends about my MS or not, and that I wasn't going to keep it a secret, but that I wasn't going to blast it out on Facebook either.

There happens to be a mom with MS who has a daughter in my youngest son's class. Although she is progressive and I am RR, we have gotten together and even attended a recent MS conference. She helps give me strength.

I've really only had one relapse, but my kids were not embarassed to have me walking funny at their school events.

It is a great support to have another mom with MS who has a daughter in my son's class. I don't feel isolated or alone. I am sorry for those of you who feel that way, or don't know any other moms with major illnesses.

[empirerecs]

HI Everyone!
I have to tell you all that you are ALL GREAT MOMS for just thinking you might not be. The fact that you all care so much for your kids to be worried says a lot about your charaters.

I don't have children for a number of reasons. I think the main one is because my family had to look perfect on the outside. My mom was an alcohlic but no one knew. She helped with field trips, classroom events, drove my sister to all her functions and all our friends and teachers thought she was great. It wasn't fun growing up with alcoholic parents, yep, dad too. I don't think I knew if she cared or not. She cared in her own way, but I didn't realize that until after she died - she was 58 and died of colon cancer.

Just because you can't see an illness doesn't mean it's not there. MS isn't always visible, as you all know and many, many times neither is alcohol, abuse, sometimes even cancer - no one knew my mom had that either.

You all are amazing people, be very proud of yourselves. As you said, raising kids isn't easy to begin with, but you all are still involved and loving moms!!!!

[jojo18]

i have a friend who's mom also has polio. i didn't notice anything different about her until he told me. (i think it was at my birthday party and he needed to put his mom's meds that he just picked up in the frig).

since then i do notice that she has a bit of a limp but w/e. she is a great cook too!

[sunshine008]

What a great thread and so touching....... I think though I'd have to say that everyone does have their own levels with MS, how their feeling, their progression etc. what i can do maybe someone else can't....

Yet I will say this i've never viewed myself as "sick" we have a disease, we'll always have it.... and I think alot of the way we view ourselves, our self concept will be in turn how others will view us....

your daughter will be fine, and youll be great with ms and with parenting...... at the end of the day all they need is praise and love and alot of rules lol....

take sometime take care of you, get ok with ms... it isnt' easy yet you'll get there hang in, your tougher than you think! and by the way screw the other mom's are we allowed to say that word?? lol ya know the mom's all dressed to the T. I've always said those mom's just aren't real........

[aitch10]

I always knew that I would be the 'sick' mom and have made peace with that, confident in my ability to make the most of it and to allow DS to have a normal, active childhood. But that's how it applies to DS's world. I didn't really think about how lonely I would be with regards to other mothers/parents. It makes me feel like the outsider dork in high school again.

[tigergrl74]

I feel the same way. There are so many times when I am the frumpy mom at the school activity who can barely stand up I am so exhausted. But I am still there, which means that I am trying. Which is so much more than some parents do, and on some level that brings me comfort. The other thing that comforts me is that I believe that my children were sent to me so that they could have the life experiences that they needed to become the people the world needs them to be.